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The Top Ten Stupid Things Said To Chiarians
10) "It would be so incredibly rare for you, too, mom, to have Chiari, and even rarer for you and your daughter to have connective tissue disorder - stop reading what's on the internet."
9) All of my Chiari doctors knew I had Chiari, at an appointment I was told my constant headaches were from wearing large earrings and if I would stop wearing them I would get better!
8) Diagnosis from a Neurology Chief of Staff when I started having seizures. His diagnosis based on CT-scan was "massive brain
7) Prior to my diagnosis by TCI, the head of the neurology department at a leading hospital told me "you need to go home and look for hidden stress in your marriage. I almost strangled him on the spot, which would probably have convinced him that he had the right diagnosis.
6) A mom wrote us with this tragic reply from a neurosurgeon: "I think your daughter is a drama queen like mine, and I think her symptoms are behavioral."
5) Another sufferer was told by a NSG at a large university hospital: "You're lucky to be alive. Get off the internet and get on with your life." It was later found that her neck was still broken.
4) One patient paid for a consult that resulted in this gem: "When I went for a second opinion and mentioned that another NSG would do the surgery (an Asian), he went on a rant saying that the NSG was just trying to make money off me and starting running down the Asian race. My kids are half Filipino."
3) One woman went to a major neurological institute (but not a CM specialist) and was told, "Go home and dye your hair, you'll feel better." She was later diagnosed and had several surgeries for not only CM, instability, cyst in her brain etc, but also a syrinx on her brainstem!
2) A patient traveled to see an expert, had a few tests, and was told to call their state representatives and senators to discuss getting quality health care in their state. They were urged to support Pres. Obama's health care proposals.
AND THE NUMBER ONE STUPID COMMENT IS:
1) "He said that he didn't know what was wrong, but definitely it was not Chiari. He had no suggestions. Being desperate as we all are at times when you know that another doctor is not going to be help you and your hopes are shattered once again...I stressed to him again how I was declining physically and that I could not walk even the length of the mall...He looked at my husband and stated, "I guess you are saving a lot of money".
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